“Why study that here? We don’t have that here.”
That’s what Gladys Maestre heard from officials when she returned to her native Maracaibo, Venezuela, to study aging and memory disorders in the general population. They told her that only people in rich countries get such diseases.
For Maestre, a neuroscientist at the University of Zulia in Maracaibo, the officials’ reaction was doubly surprising because Maracaibo has been a center for continued study into Huntington’s disease for more than two decades, which she thought had made the brain’s workings more obvious. She realized that brain researchers needed to do a better job explaining what they were studying—and what they’d found out—to community leaders and to their volunteer subjects.
As the field of neuroethics approaches its 5th birthday—the term was coined at a conference in spring 2002—widening awareness of the responsibilities researchers take on when they tap deeply into volunteers’ brains is giving rise to new questions in places such as Venezuela, Canada, and Japan. Scientists from those countries, as well as the United States, gathered at SfN for a symposium called “The International Frontier of Neuroethics.”
“They come, they give us their best,” Maestre said of her memory disorder research subjects. “We should do no less for them.”
How and how much to tell families and volunteers about both the benefits and limits of the research was just one set of the ethical questions she and her colleagues faced as they developed their project. They found little guidance.
“We need more research to develop psychological frameworks to respond to ethical problems that come up during the research,” she said, such as social structures, traditions, attitudes toward brain disorders, and patients’ expectations of being “cured.”
Such help is coming, said Judy Illes, a neuroethicist at Stanford.
“The next generation of neuroethics is moving beyond issue identification, where we’ve been for the past five years, into the building and delivery of tools that are resource-based, reference-based, and education-based,” Illes said. “As we build these tools, I think we’ll be solving some of these problems and perhaps even more-complex problems as they arise.”
One question that has arisen in Japan’s efforts to study neurological development is, what is an optimal brain? The country’s ministry of education is helping fund a longitudinal study of 10,000 children to identify milestones of brain development, said Takao Hensch, of the RIKEN Brain Science Institute in Japan until he moved to Harvard University this year. If researchers learn how to extend or expand a child’s critical periods for learning or for emotional development, should they do it? If it is done for one child, should it be done for all? Who would pay for it? What about adults?
In Canada, the government used workshops, international tours, and other outreach to include varied voices and perspectives while developing a strategic plan for its new Institute of Neurosciences, Mental Health and Addiction, said Rémi Quirion, the institute’s scientific director. The plan’s four priorities—innovation, partnership, translating knowledge to practical use, and international exchange—involve cooperation and collaboration across country borders or across disciplines.
A prominent topic is bioethics. The methods Canada and the institute used to reach consensus on its goals might be adopted by people or governments interested in neuroethics to debate and build consensus on how to frame ethical questions and build practical solutions, Quirion said.
In Maracaibo, where not everyone has access to health care, the researchers have developed an ethical solution that works for them: “justice as reciprocity.” That includes telling people what will happen to them as volunteers in the course of the studies and why, asking for and answering all questions, and telling families and the community what researchers have found so far. For these decade long studies, researchers obtain informed consent every year, not just once at the beginning of the project.
“Every year, they keep coming,” Maestre said. “It is because of their acceptance of risk and inconvenience that we are able to generate the findings necessary to advance research.
“They come because we care,” Maestre said. “We make it clear to them.”